Chapter Four: "Closet Narcoleptic"

(Important reminder: 'narcoleptic' isn't technically politically correct—if speaking to someone with narcolepsy please use "person with narcolepsy" or PWN, unless they say otherwise.)

'Closet Narcoleptic' is a term I began using with my family. It describes the time from age 13, to my diagnosis. I call it this because it is the time when my symptoms were at their worst.

My disorder was truly becoming apparent at this time, but it was also the time period when I found the most excuses for my symptoms. I regularly swept the symptoms under the rug faster than you could say, 'sweet dreams.' As my Star Wars friends would say, "the denial was strong in this one."

As I entered puberty, my sleep problems grew worse. 'Puberty" also became my excuse, it seemed like a logical cause and effect relationship: puberty hit, I didn't sleep well. Must be because of puberty!

I began sleep walking more at night, taking long naps in the afternoon, and sleeping on the bus, unfortunately, this behavior went unseen—even by my parents.

Teenagers, especially those going through puberty, often sleep more. They are supposed to. By those standards, nothing was strange. Besides, my grades had not slipped, so I couldn't be that tired! Right?

The truth was that I was smart. I'm not being cocky,  I'd always had excellent grades—I was one of the lucky ones who excelled at many subjects without the need to seriously study. In high school, I simply figured out which classes I could literally "pass in my sleep" and planned my naps accordingly. Math was hard: it required me to stay awake. English though? Piece of cake! Sweet dreams...

The increase in naps was also overlooked--mostly because of a lack of witnesses. I had a routine: naps during certain periods in school, naps on the bus, and naps after school at my grandma's house before my parents picked me up.

The people who knew I slept at school (teachers and friends) didn't know I was also sleeping on the bus and at home, and likewise. I was the only one who truly realized just how much I slept--and at the same time I didn't fully realize it. I'd learned long ago that teenagers need more sleep.

I thought I was normal.

There was even a period of time I stopped sleepwalking!

This  event, is the most vivid sleepwalking memory I have.  When I was around 14, my sleepwalking increased dramatically. Perhaps it was the stress of starting high school, or hormonal changes that accompany puberty, but I was sleepwalking several times a week!

That ended abruptly with one final walk.

That night, I started to get out of bed to sleep walk. My feet got tangled in the sheets before I could get out, though. Having already shifted my weight, and unable to get my feet under me, I careened wildly out of bed. The sensation of falling woke me up, but it was too late to save myself. The first thing that hit? My face...right on the metal dog crate next to my bed. That's right, my face, propelled by my entire body weight, slammed into metal, followed shortly be my knee—finally freed of the sheets.

At the tender age of 14 (old and mature enough in my teenage eyes to 'know better'), I had fallen out of bed! To make matters worse, I immediately burst into tears and ran into my mom's room, confused, bleeding, and in pain.

She treated the injuries the best she could that night. Mostly that meant stopping the blood that was pouring from my knee, nose, and gums: the three areas that hit the hardest.

The next morning however, it was even worse. My nose was swollen and tender, I had a black eye and bruises all over my face, my gums were bruised, and my knee was cut deep enough that I actually needed stitches. In short, I looked like I'd been in a car accident, and I felt awful.

For many months after that, I didn't sleep walk. Not one time! Often I'd move around in the bed, or talk in my sleep, but it was as if even my subconscious had learned a lesson, and it was the longest period of time I ever went without sleepwalking.

Good things never last forever, though.  As they say, 'time heals all wounds' and I slowly began again about six months later.

During this time I also experienced what I believe was the first hypnogogic hallucination, another common narcolepsy symptom.

The National Sleep Foundation describes it best: "During the transition from wakefulness to sleep, the patient has bizarre, often frightening dream-like experiences that incorporate his or her real environment."

I'd been experiencing the sleep paralysis upon falling asleep, and occasionally when waking up, but the first time it combined with the hallucination was one of the most terrifying sleep experiences I can recall.

Often times, PWN say their hallucinations prey on some of their greatest fears—for me that manifested as a spider. When waking up one morning, I glanced down at my arm to see a giant spider crawling on it. I could feel the tiny feet press into my skin as it moved, preparing to strike.

I wanted so badly to scream, fling off the covers, leave the room, wave my arm around, ANYTHING to save me, but my body simply didn't work. There was no screaming, not even any blinking. This only added to the panic I already felt. What was wrong with me? 

The sleep paralysis kept me frozen and I could only pray that I wouldn't become prey. 

The paralysis lifted only moments later but strangely—the spider disappeared with it. To say that I was horrified would be an understatement. I was trembling from fear and repeatedly searched the sheets and room for the mysterious spider.

This hallucination, combined with the paralysis, would repeat itself for months. Eventually it became just a regular part of waking up, and I almost welcomed it, as the adrenaline surge was the most effective alarm I'd ever used.

Beyond sleeping more, and the spider hallucination, my teenage years were pretty normal. I was able to get a driver's license and got a job at a fast food restaurant. Shortly after high school, I began dating Eric, the man who would go on to become my husband.

Unfortunately, college would also go down in history as 'the darkest days' of my life.